Newborn screening (NBS) plays a critical role in enabling timely access to care for an increasing number of rare and genetic diseases. However, this access is far from equal across the EU.
At Hict, we support pharmaceutical and biotech companies in bringing innovative treatments to patients. But ensuring access to treatment is only part of the challenge. For conditions where treatment needs to start within a critical window, patients must first be identified early enough to benefit, ideally before symptoms and irreversible damage occur.
This makes newborn screening (NBS) an important part of the patient access pathway for a growing number of rare and genetic diseases. Yet, access to NBS remains highly unequal across the EU. Depending on where a child is born, they may or may not be screened for a condition for which early diagnosis can make a significant difference. This creates a “postal code lottery” in access to early diagnosis and, ultimately, timely care.
Expanding newborn screening is complex, and countries encounter challenges both in deciding which conditions to screen for and in translating those decisions into practice. At the same time, considerable knowledge and experience already exist across the EU. The problem is that this expertise is scattered, making it difficult for countries to systematically learn from each other.
We believe there is an opportunity to help bring this knowledge together and turn individual countries’ experience into shared learning, which can support faster and more effective implementation of NBS across the EU.
In our new white paper, The Missing Link in Newborn Screening: Why Europe Needs Shared Implementation Knowledge, we explore this challenge, the missing link we have identified, and how we believe we can contribute.
Read our white paper or get in touch with Lies Schoonaert, Policy Manager at Hict, to discuss our perspective and opportunities to contribute.
Geïntereseerd in onze expertise over Policy?
Contacteer ons nu en optimaliseer uw organisatie!
